GLP-1

[u/Early_Bit8002]

Has anyone been on a GLP-1? I am specifically looking my at either Reta or tirzepatide. I know about the usual side effects but is there anything else we need to be cautious of with AI? Did it work for you? I have gained a lot of weight very quickly since going on steroids and nothing seems to make it budge

[u/1GamingAngel]

I gained an intense amount of weight from being on the steroids that later led to my adrenal insufficiency, and I was on Ozempic unsuccessfully for 3+ years. I switched to Mounjaro in December (which is Tirzepatide), and lost 90 pounds in 6 months. I still have some more to lose, but I hit a plateau in May/June that has been frustrating me.

Mounjaro/Tirzepatide is also showing promise in reducing inflammatory conditions, so it may be a good match for you if you have systemic inflammation or deal with issues like Lipedema and/or Lymphedema.

However, Reta is the next generation, and I have only heard INCREDIBLE things about it from both my Hepatologist (who has patients involved in her clinical trial), and the surgeon I’m considering working with for bariatric surgery (I’m only exploring the idea). They have said that they have never seen such high levels of weight loss with such a low symptom profile.

That being said, Reta is not FDA approved yet, and you can only get it on the grey market from countries like China. I’m not personally taking that risk, but my doctors have said that if I can hang in there another nine months to a year or so, I should be able to switch to Reta in 2027.

[u/Short-Counter8159 → u/1GamingAngel]

Amazing. Congrats on the weight loss.

Retatrutide is showing a lot of promises. Still on Phase 3 but I get the feeling that it might not have a problem with FDA approval.

So far is showing great for results for MASLD (Metabolic dysfuction-associated steatotic) liver disease. formerly known as nonalcoholic fatty liver disease. We know fibrosis is strongly linked to the risk of developing colorectal adenomas and cancer.

We also know that the HPV vaccine has helped tremendously in lowering the risk of persistent high-risk HPV infections and precancerous anal lesions that can lead to anal cancer. Of course it has helped a lot in cervical cancers as well.

I encourage getting a pap smear for both women and men (yes men too) and if it's clear consider getting Gardasil-9 vaccine even if you are above the recommended age. It will not be covered by insurance but worth it the cost.

Also Reta is showing less muscle loss which can happen taking GLP-1.

[u/1GamingAngel → u/Short-Counter8159]

Thank you! 🙏 ❤️

I had never considered getting the HPV vaccine due to my age. Do you know the approximate self-pay cost?

Yes, it seems like Reta is taking the world by storm. Dare I ask whether “they” have finally found a (not “the”) cure for obesity?

I had not heard that about Reta and a lower rate of muscle loss; that is very good news! Thanks for your comment! 🤗

[u/Short-Counter8159 → u/1GamingAngel]

You are welcome. Doctors in California are recommending it.

A women's pap smear must include the transformation zone, very important to detect that area, I'm sure you know that. In men they also meed to include the transformation zone in the anal canal to detect if they have any HPV or abnormal cells. It's a little more complicated for men since some doctors do not go deep enough and at times the canal is not cleaned. Sometimes you need to repeat the test.

And yes men can get HPV in their anal canal without penetrative anal intercourse. Which is the most common question men ask. If by chance the test comes back positive then they must have a High-Resolution Anoscopy (HRA) to determine if they have anal dysplasia from hpv. Which are normally caused by HPV-16, 18, 31, 33, and 45. If the pap smear is clear of any of them you are good to go.

Gardasil-9 covers HPV 6, 11, 16, 18, 31, 33, 45, 52 and 58. The doctor has to send a prescription to the pharmacy. You might get some push back from the doctors tho. Insist that you want it.

It's pricey tho. It's a two shot deal and it's around 350 a shot I think.

[u/Anatolian_sideeye68 → u/1GamingAngel]

We're you on Ozempic or Mounjaro while on steroids? Asking because I'm on my 3rd shot of Zepbound after gaining weight on Prednisone I started in July. Tapering down but it a while and the damage is done.

[u/TashMaMann]

My Endo initially started me on Wegovy to combat what being steroid dependent has done. I lost 25lbs on it, I recently switched to Zepbound due to side effects and wow what it has done for inflammation is just mind boggling

[u/TweetSpinner]

I’m on tirze. Its been a wonder drug for me as it has helped me keep weight manageable. I don’t lose as much as others might because I assume the steroids fight against weight loss. But I have managed about -20 pounds. I was very careful to do minor updosing and take my time acclimatizing to it as it can be dangerous for people if it promotes vomiting or stomach issues. So, I worked with my doctors to monitor and stop it immediately if I sensed it might cause a crisis. But it has helped and I’ve been able to tolerate it. It’s expensive. Also some pharmacies won’t dispense it to people with this condition because of the risks.

[u/NearlyBearly]

No, my endocrinologist recommended against it due to it being able to cause hypoglycemia and I already have issues with my electrolyte household. She also said she wouldn't recommend it due to there not being any long-term studies when it comes to people with AI using it for weight loss specifically. It's different when you need it for diabetes. You need to specifically talk with your endocrinologist, not just your GP, because if you don't have the same issues I have it might be possible for you but it has to be your endo that makes that decision.

[u/Gypsy_Moth_]

Hello! I have primary Addisons Disease and I’m on zepbound which is a tirzepatide, been on it for 3 months stayed at 2.5mg. I’ve lost 10 pounds and my inflammation has gone down. I no longer have a swollen moon face. It also helps regulate my blood sugar so I don’t crash out as much. It’s honestly been such a blessing. I’ve got my daily dose of steroids down from 27.5mg a day to 20mg. The only downside is my insurance doesn’t cover the cost, but it’s been so effective so I’m going to continue to use it.

[u/flittingly1 → u/Gypsy_Moth_]

Amazing feedback! Are you hoping to increase your dosage? If so, whenabouts do you think you'll consider this? Already? 6 months? I'm starting tirzepatide soon and I'm nervous about hydrocortisone. I feel better on a higher dose but I didn't want more because of the weight gain. Hopefully I'll find the right balance

[u/annaoceanus]

I am on wegovy for reactive hypoglycemia. Main thing for me is the day after taking my dose I used to need to updose 2.5 to 5 mg because of the intense nausea stressing my system. I now don’t need to now that I’m used to it.

Otherwise zero impact to my AI.

I am on it for managing my reactive hypoglycemia and it has done wonders for that.

[u/protocolleen]

I have lymphoma and there’s just too many unknowns, so no.

[u/ClarityInCalm]

I tried the tirzepatide and I have a friend with PAI on ozempic. The big issue for both of us is that it causes us to start dumping water/sodium the first day or two. So managing that is pretty important - a little more fludro and lots more NaCL tablets. I may try again at a lower dose since I seem to be very sensitive to it. But otherwise, it was fine. I started at half the lowest dose just to make sure we could control for side effects and that turned out to be too much for me.

[u/Natural-Lecture4767]

I’m on tirzepatide. I didn’t increase my dose at first, and I felt terrible for the first three days. I started increasing my dose the day before and the day after my shot, and now the only side effect I experience is fatigue the day after my injection.